The updates, stories, struggles and challenges of Aurelia Dittrich, a young girl first diagnosed Hypoplastic Left Heart Syndrome, a congenital heart defect, and then Osteopathia Striata with Cranial Sclerosis, and also Cyclical Vomiting Syndrome. This blog will also talk about the amazing support and love and journey of her older sister, Madison.

Friday, November 26, 2010

Black Friday? I don't think so!

Today most certainly does not fall under the title 'Black Friday' when talking about Aurelia's progress. Even though a PICC line is one of the most common surgical procedures performed at CHOP, Jillian and I worried that Aurelia's exposure to ketamine (again!) combined with her exhaustion would lead to more disaster.

Happily she proved us wrong. Jillian woke early to be with Aurelia while I cuddled with Madison to prevent catastrophic family meltdown. Though scheduled for an 8:30 a.m. departure, anesthesia took Aurelia at about 7:45 making Jillian's early arrival at the hospital fortuitous.

It turns out that Aurelia had a great night last night, sleeping soundly (so soundly she set off brady alarms a few times because of how deeply she was out and how much her body shut down to recover from the previous few day's trauma). The staff checked on her during these times, but expressed little concern because her SATs didn't drop significantly at all. In fact, by the time she was wheeled off to anesthesia this morning her high flow oxygen had been dialed down to 5 liters at 20 % or so oxygen. That was great progress from the previous two day's disasters on CPAP.

When she returned from surgery we nervously awaited the summary from our nurse, Mike. Turns out, she did great! She came off the ketamine a bit cranky (not unusual for a kid coming down off a hallucinogenic high!) but never had any real distress breathing or any elevated heart rate! Yes! She rested comfortably for several hours and other than being a cranky mccrankypants over a few wet diapers she handled today like a champ!

The NEC watch continues to go well. They got her antibiotics hooked up to the PICC and started her on TPN as well since the only real issue she still faced this morning came from no nutrition during the previous 36 hours. The last bit of fussiness I observed came when they removed her secondary line (the third IV she had in these two days), and no wonder considering that it too had infiltrated. That's three IVs that didn't last 24 hours! Our poor girl's veins are so battered!

Thankfully the phlebotomy folks got their labs done right after the PICC installation, so the blood draw could be done cleanly without contamination, and she was asleep for her NEC x-rays. The film came back negative for pneumatosis, which is super, and her labs showed only a drop in glucose (likely due to her lack of feeds). Her bowel movements still test positive for NEC, but she's had no physical symptoms - blood in her stool, pneumatosis in the bowel wall, hardened stomach, etc., so the course of action to fight off this infection is the same - another 5 days to go on this barrage of antibiotics and hopefully we can get a schedule for her last surgery sometime by the end of next week.

This afternoon Aurelia flashed her smiles at everyone. She engaged her hanging toys, listened attentively to her music, stretched her tightened upper torso quite a bit (PICC and all!), and settled into a great night's sleep again. Her night nurse, Cathy, was with Aurelia the night she was transferred over from the CCU, and she agrees that she looks marvelous, comparatively.

I'll leave you with a couple of clips of our girl. The first is her yesterday, after they got the CPAP off her. She was so happy! The second is today. About 45 seconds in you'll see her flash that smile!

Oh, and last thing - tonight as I left her bed (Mommy was home putting Maddie to sleep) I kissed our sleeping Aurelia on the forehead as she slept......and she smiled at me in her sleep. My heart melted and I immediately fell in love with my daughter all over again (and about 10 times harder I might add!)